My last post was a fictionalised account of what life is like with a severely disabled child. But I don’t want to leave it on that note, as real as it is. I would like to explain how my church got me through those years when my children all lived at home and I was juggling all their needs when one of them had complex multiple disabilities.
When my daughter was born, three months prematurely and fighting for her life, two things happened immediately. One was that a lady in the church organised a 24 hour prayer chain, so that at every hour of every day and every night, someone in the church was praying for us. We felt it. We were borne along on the strength of those prayers, and of the God who answered them. The second thing was that the amazing ladies of our church swung into action and arranged a meals rota, so that when I came home from the hospital each evening I didn’t have to cook.
Over time, other things began to happen too. If I could have my time again I would probably do things differently. But I didn’t know if my precious baby was going to live or not, and I wanted to spend as much time with her as I could. Additionally, I wanted to breastfeed her. This had never been done before with a 27-week baby at our local hospital and the doctors encouraged me, as they wanted to know if it was possible. This meant I had to go in at least every morning and evening to feed her, and I had to express enough milk for the nurses to give her when I wasn’t there.
With hindsight, I would perhaps have gone in every other day and had alternate days to devote more time to my toddler, who definitely suffered from being passed from pillar to post. But it’s easy to say that now, given that my baby survived and grew to adulthood. If she hadn’t made it, I’m sure I would never have regretted the time I spent with her. And as for the feeding, it turned out that because of the cerebral palsy she couldn’t suck from a bottle, and if I hadn’t breastfed her she might well have ended up permanently tube fed.
People from my church stepped up and offered to look after my toddler each morning – one lady had her 3 mornings a week for 3 months because she felt it was important for her to have consistency of care. Other people babysat each evening so that once the toddler was in bed we could go back to the hospital.
As time went on and I became more exhausted, people from church would appear on my doorstep and whisk my laundry basket away and bring it back washed, dried and ironed. And when finally my daughter came home, aged 3 months, with all the breathing and feeding problems described in my story, the same lady that had organised the 24 hour prayer now organised a rota so that I had people from church coming in every day and doing all the household chores, leaving me free just to look after my children. After having the nurses look after my daughter for 3 months, I didn’t want help with her, I wanted to be able to do everything for her myself. And so the ladies from church came in and cooked, cleaned, laundered, vacuumed, ironed and changed the beds, leaving me able to do all the mummy stuff.
My daughter’s cerebral palsy wasn’t diagnosed until she was 15 months old. One of the church leaders knew that we had an appointment at which we would be given details about the reasons for her failure to pass the normal milestones. He put the date of the appointment in his diary, and the next morning he was on my doorstep at 9 o’clock to find out what we had been told and to let me have a good cry and to pray with me.
As the years went on my daughter was in and out of hospital frequently, and each time, this wonderful church machine swung into action again. I don’t know how I would have managed without them. My pastor’s wife came round to help three times a week for months on end with two of her own little ones in tow and just served me unstintingly. My life passed in a blur of my daughter’s health crises, and I clutched at these lifelines gratefully.
At one stage we lived in one local authority and my daughter went to school in another, and during the school holidays both of them washed their hands of her and neither would provide physiotherapy. She couldn’t survive the 6 weeks’ summer holiday without any physiotherapy, and it was an added burden on me having to carry out the demanding regimes every day. And so a physiotherapist in the church got a few willing people together and taught them the physiotherapy exercises that were needed. Then they took it in turns to come in and carry out her exercises each day throughout the holidays, giving me the time to sit and play and read with my eldest daughter.
Eventually baby number 3 was on the way, and in an effort not to have a third very premature baby, I spent 5 months more or less on bed rest, and in and out of hospital. My mother came to stay as often as possible, but whenever she wasn’t there, the church swung into action again to fill her shoes. One lady in particular whose house backed onto my back garden said I could phone her whenever my daughter needed the toilet, and she would come round and lift her out of her wheelchair, onto the toilet and back into her chair again, as I was not allowed to do any lifting. She kept this up throughout my entire pregnancy.
That particular lady’s husband also came round every Monday evening for four years to pray for our daughter, until a change of job meant he could no longer do it. It was from this time onwards that she began to learn to talk, defying the doctors’ prediction that she probably didn’t have the intelligence ever to learn any speech. I am convinced that was an answer to his prayers.
When my daughter reached her teens, despite her learning disability, she began to be able to express, in her own simple way, a faith in and love for Jesus. We spoke to our pastors about the things that she said, and they agreed that if this was her confession of faith, there was no reason why she shouldn’t be baptised. She was enthusiastic when we asked her if she would like this, and so a day came when a couple of strong men lifted her out of her wheelchair and into the baptistry where her father and one of the pastors were waiting to baptise her.
When she was 29 her father died very suddenly after a short illness. The pastor came round to minister to the family, and also to help us plan the funeral. He included her very much in these discussions, never talking down to her or assuming that because of her learning disability she wouldn’t understand or be able to participate. He offered her an opportunity to choose one of the hymns for the funeral, and she chose “Jesus is the name we honour”.
Now she is in her thirties, living in a residential care home close by, and comes with me to church every Sunday. She remains a much loved member of the church, and is helped to participate, even sometimes being invited to choose what we will sing in the worship.
I know that people in the church still pray for us, and though our needs have changed and I don’t need the kind of practical help that was such a lifeline when she was small, the church continues to embrace us and is an ongoing source of support.
So, if anyone read the story I posted last time and wondered how a church should respond, this, my friends, is what pastoral care for a family with a disabled child looks like, and this is what love looks like.